1 Valuing Inclusion: Collaborative Research with Persons with Disability Mazna Patka, Colleen Kidney, Erin Stack, Katherine McDonald, PhD Portland State University Society for Community Research & Action June, 2011

2 Acknowledgements Funders –Centers for Disease Control / Association of University Centers on Disabilities –National Institutes of Health –Oregon Clinical and Translational Research Institute (a component of NIH) –Oregon Health Sciences University Medical Research Foundation –Portland State University Faculty Enhancement Grant Academic & Community Partners –Elesia Ashkenazy –Cody Boisclair –Sebastian Dern –Lisa Howard –Rosemary Hughes –Marsha Katz –Darren Larson –Dr. Christina Nicolaidis, –Mary Oschwald –Eddie Plourde –Laurie Powers –Dora Raymaker Organizations –Autistic Self-Arc of Multnomah/ Clackamas Counties –Advocacy Network –Self Advocates As Leaders –Summit Independent Living Center

3 Developmental Disabilities Originates before the age of 22 Expected to continue indefinitely Limited functioning in major life activities Cognitive and/or physical Examples: –Autism –Down Syndrome –Intellectual Disability –Blindness –Deafness (American Association on Intellectual and Developmental Disabilities, 2011)

4 Traditional Disability Research Focus on children creates perception of persons with disabilities as static, eternal children Deficit-oriented Something intrinsically wrong with individuals Proxy report (parents, teachers, professionals) Further marginalization 4

5 Nothing About Us Without Us Disability Rights Movement Community members actively involved Needed, relevant research aims Aims to empower individuals & create social, organizational & political change –Increase control 5

6 Three Projects 6

7 (1) Adults with Intellectual & Developmental Disabilities on Research Participation Qualitative study of the perspectives of adults with intellectual and developmental disabilities on participating in research. Research advisors with intellectual and developmental disabilities provide guidance on all aspects of the research:

8 1: Recruitment 2: Informed Consent 3: Interviews 4: Incentives ??? 5: Analysis

9 Bring together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autistic spectrum (Academic and Community Co-Directors, PIs, and Steering Councils) Healthcare Study 1: Mixed-methods study of healthcare disparities, experiences and recommendations Internet Use, Community, and Well Being: Survey of Internet use, connectedness and well-being Webtools: Mixed-methods study to develop webtools for effective communications with healthcare providers The Gateway Project: secure online registration system for ongoing research 9 (2) Academic Autism Spectrum Partnership In Research & Education

10 (3) Partnering with People with Developmental Disabilities to Address Violence Bring together academic partners with adults with developmental disabilities to: 1.Develop safe, valid study materials; 2.Identify the physical and mental health outcomes an correlates of IPV against people with DD; Steering Committee & Community Advisory Board (CAB) CBPR Evaluation Study 10

11 Structures and Processes for Working Together 11

12 Contributing to Research “Hey guess what? Have you hear of CBPR? I know how you can take your research to the next level.” Attention to process for CAB meetings –Pre-meetings –Group guidelines/moderator, finger counts, specific tasks –Keep & change procedure –General high enthusiasm for CAB meetings Originally, less attention to formal process issues for Steering Committee & Investigator meetings –CAB processes also help academics 12

13 Finger Count One Finger -- Yay, I love it! Two Fingers – It’s OK. Three Fingers -- I am not sure, I need more information or discussion. Four Fingers -- I don't like it, but I can live with it. Five Fingers -- I hate this so much that I can't live with it. 13 Nicolaidis, C., Raymaker, R., McDonald, K., Robertson, S., Dern, S., & Ashkenzy, E. (In Press). Collaboration strategies in non-traditional CBPR partnerships: Lessons from a geographically-dispersed partnership with autistic self-advocates. Progress in Community Health Partnerships: Research, Education, and Action.

14 Benefits to Research 14

15 Accessible Consent Procedures & Materials 15

16 Accessible Research Participation 16

17 Co-Learning Opportunity to contribute, learn and build bridges between diverse groups –Diverse expertise, knowledge, and skills –Develop bidirectional depth of understanding (research priorities, interpretation of findings) [There are] different insights with different people like the professional and the self-advocates and the investigators … you … learn from one another.. so just in general, helping the researchers with blind spots. Builds capacity to improve quality of life for persons with developmental disabilities Giving people with dignity and respect they need… has been very valuable. That has been something we have been careful to exhibit here and something I have learned by example of my fellow travelers on this project. 17

18 Contact Information Katherine McDonald, PhD